Mom will be needing Hospice

Status
Not open for further replies.

jessielf

Active member
Joined
Dec 26, 2011
Messages
66
Reason
Lost a loved one
Diagnosis
08/2011
Country
US
State
WI
City
wis rapids
My mom just called and told me she is getting worse and that her neurologist wants her to get hospice. I don't know what to think or how to feel. At times the way mom talks I have already lost her. Something she also forgot to mention but I think I already knew is she has bulbar palsy. I am ok with what she she has and I do accept her but I think the "mom" in her is already gone. I can't even bring up anything going on in my life even if it includes my kids w/out her changing subject to back to her. In all honestly I feel I want to just distance myself from her. She doesn't have any joy to her anymore. Her neurologist also wants her to go the specialist asap because of her getting worse. I planned to go when she was suppose to go later, but now that she is getting worse I don't think I could take any more bad news especially if they decide to give her a new time frame. I know when the new baby comes she probably won't have any kind of emotional connection w/ him. It just sad that she doesn't try to be positive about anything and I know that she all the right not to, but I want to remember the happy mom not the mom she is turning out to be. Boy this thing robs you of everything!
 
I totally understand how you feel. I feel like I've already lost my mom, she's gone. The mom I knew and loved is no longer here because this disease has robbed her of everything. I also wanted to distance myself from my mom -- it's so hard for me to see her this way, suffering, knowing how much she wants to pick up my kids and play with them and hug me and she can't.

They won't give you a time frame. I wish they would, but it's so different with all ALS patients. My mom is currently in hospice, has been since right after Thanksgiving.
 
I just want my mommie back! How can I get through this with her? I guess I'm not handling it the way I thought I was. Everything is happening so soon! I didn't expect hospice to get involved so soon and she has to make a living will and all this stuff before she can't talk. My mom is such an important part of my life and I see her slipping away all the time. I am at a loss. I'm trying to get ahold of myself so I can just be strong for her and my family. Why oh why did it have to pick her!?
 
I want my mom back to. Unfortunately that is not an option. I have been strong for my mom and respected her wishes. Unfortunately, she is fighting even the things that will simply make her comfortable.
 
Please do whatever it takes to make your loved ones happy in their final days. Your time to mourn will come....waaaay too soon! The "time frame" we have is less than six months. That is too soon for me, but he is ready and I respect that. I try to make every minute of every day about him, because too soon I won't have him to fuss over or just be with. Put your own needs aside and just be there for them. Love, love, and love them. Make every minute count!
 
Just a note... for some of us, "do whatever it takes to make your loved one happy" was/is an impossible task leading to frustration, exhaustion and even illness in the caregiver. I know it wasn't meant to be insensitive, but please try to remember that for a number of caregivers here, who have PALS dealing with a double diagnosis, there simply IS no making them happy and that is NOT their fault.
 
Am I reading this wrong or something? Because to me it sounds like your Mom's illness is just too hard on YOU and if she doesnt ACT the way YOU want her to, then you are considering not being supportive because its too hard on YOU?
Please tell me Im wrong on this one.
This strikes a chord with me. My PALS kids abandoned him. He still here, ten years later, fighting everyday. So yeah, im a little sensitive with this topic.
 
Katie C: perhaps I am fortunate in that my PALs is easy to please for the most part, and that I DO whatever he wishes to make him stay that way. We have less than six months together left and I will be darned if I ever do any less. I am fortunate in that I am being allowed to work from home, so that helps enormously. I treat him the way I would want him to treat me. That's all anyone can ask of a caregiver. That was my only point.
 
Mrs C I understand that that is your situation and that it works for you. I only ask that you realize that it doesn't work for everyone because a PALS with FTD is without empathy or sympathy or inhibition or impulse control and there is simply no pleasing them and they can be quite nasty in their expression of their displeasure. It's not simply a matter of not having the time.. I was a stay at home mom before Glen got sick so I was with him all the time. I would have LOVED some sweet, gentle moments with him before he died. But if I tried, he either lashed out or laughed at me. That is what the caregivers of a person with double diagnosis face. The guilt that comes with that can be horrendous... implying that they aren't doing enough can only add to the burden.
 
Those of us who care for a loved one with ALS have devastated lives. No doubt about that. Some situations are worse than others.

But there is no way to equate the devastation of the disease on the patient with the hardship on the caregiver. The disease trumps everything. In my view to create physical or emotional distance between the caregiver and the patient would be a step beyond the pale for most folks--even in the face of symptomatic abuse on the caregiver.

In the case of the original post, the daughter of the victim wanted to create distance (it seemed to me) to preserve her own sense of well being, to the emotional detriment of her mother. I ask you, if a mother calls you to say that her neuro recommends hospice, would one expect a well-spring of empathy and helpfulness?

Like others, I am tired, worn out, and often emotionally spent by the challenge of this disease. But I will never--no matter what--withhold my efforts or myself in the care of my spouse. It's that personal. And by the way, is there anybody on this site who thinks he/she will not grow old and infirm and desperately in need of help? Perhaps by our devoted attention to our ALS loved ones, others in our lives will learn something and will step up when we need their help.

In the meantime, we all have a lot to think about.

VL
 
I was thinking the exact same thing.......Stop feeling sorry for yourself and take care of your mother, I'm sure there were times in your life when it was hard to take care of you too.....Sorry, but strikes a chord with me as well...
 
I'm sorry IF I offended any of you, but I wrote on a down day, I was just trying to look for some kind of support. Looks like I found a wrong support group
 
Thanks for the update on you. And how's your mom?

Folks, I just can't help it.
 
I AM taking care of my mom, but I also have to take care of my young kids and the one growing inside of me. I was only talking and getting my feelings out. I would NEVER desert my mom! We are close and I'm scared.

vlcare thanks for asking. She is holding in there. She hasn't heard from the ALS clinic, and nothing else on what was said by her Dr. My older 3 kids are w my parents for the weekend. I didn't think that all this would be brought so sudden, its a shock to us all and I can't imagine whats going thru my mom's head. Thanks again for your support I needed that! :)
 
Status
Not open for further replies.
Back
Top